Living with motor neurone disease (MND) and dysphagia – the personal experiences of people with MND and their caregivers

Abstract

Introduction MND is a rare progressive neurodegenerative illness for which there is no cure. There are approximately 350 people diagnosed with MND in Ireland at any one time. Dysphagia frequently occurs in neurodegenerative diseases such as MND. Dysphagia is generally reported to interfere with the quality of life of PwMND; however, little is known about how people living with MND understand and experience dysphagia. Aims To explore the experiences of dysphagia in MND from the perspectives of PwMND and their caregivers in order to investigate: (1) how they understand dysphagia, (2) how dysphagia impacts their lives, (3) their coping strategies in relation to dysphagia, and (4) their experiences of professional services received to manage dysphagia. Methods In - depth interviews (n=58) were conducted with 10 PwMND and 10 caregivers from Ireland. Data was analysed utilising Interpretative Phenomenological Analysis whereby an idiographic approach was followed by a cross - case analysis of each group. Results It emerged that both groups approached dysphagia in a different manner. PwMND aimed to manage dysphagia on their own; however, the caregivers wished for increased professional support in specific areas, such as the management of choking. A changed perception of food and diminished eating - related pleasure was observed in both groups. Also, a difference was noted between participants' perception of their dysphagia and their clinical presentation. Participants expressed their views in relation to professional services received for dysphagia. Conclusion This study suggests that the experience of dysphagia in MND is complex and should not be investigated / managed in isolation. PwMND and their caregivers understand dysphagia differently and may have different expectations regarding dysphagia management.